So we found out Jack had Ds prenatally. The next step was several ultrasounds and a fetal echocardiogram since many babies with Ds have heart issues. (40% is what is stuck in my brain but as of right this minute I can’t back it up!) Jack seemed great except the amniotic fluid was a little low a couple of times. Even his heart was great.
And then he was born. Within a few hours, it was determined that our little man had pulmonary hypertension and guess what else? Heart issues. Thanks a lot fetal echo (you worthless p.o.s.). Our baby had a small to medium hole between the upper chambers of his heart (Arterial Septal Defect – ASD) and a medium to large hole between the lower chambers (Ventricular Septal Defect – VSD). They had to be fixed. Our goal was to get him big enough to undergo open heart surgery. The problem was between the heart issue and the PH, he wasn’t able to stay alert enough to eat enough to grow. So our guy had to have a feeding tube through his nose, or a ng tube. The way he could sleep away while still getting food into his tummy. Of course the Drs wanted to keep him in the hospital as long as possible but mommy was done with that place. He was removed from the NICU not exactly against orders but I sure had to fight for him. I think they were afraid I would steal him if they didn’t let me take him! Jack removed his own ng tube a few times after we got him home, but after about a week, he was eating the required amount ON HIS OWN!
That was the end of Nov. Less than 2 months later, our sweet baby boy underwent open heart surgery. When the Dr called to say they were ready to set the date, I was a wreck. I was shopping and cried right there in the store. By the time we arrived at the hospital, I was okay. I just wanted him fixed. His surgery was on Tues.
Wed was ugly; he was on morphine most of the day and so out of it. He slept a few minutes at a time and would cry when he was awake :( . Thurs morning he was so different! They moved him to a regular room, he was only on Tylenol, and that Sat, we went home! 4 days!
Thurs.
Sat., right before going home!
7days after open heart surgery!Little did we know almost exactly 2 years later, the little girl that we would adopt was undergoing (in Ukraine) pretty much the exact same procedure! The echocardiogram shows her surgery was to repair the same problems that Jack had. Weird! And even weirder, our cardio says it was a great fix. Of course I don’t have photos of Dasha after her surgery and we weren’t there to hold her and whisper that it would be okay. I hope someone was. I am thankful every day that someone got her that repair. But her scar looks even better than Jack’s!
Both of them now have near perfect hearts – the cardiologist says so :). And today is the day, 5 years ago, that all of that started, Jan 23.
So precious! Jack loves his sister :)
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